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  • What option would be most convenient to you and help you stay on track with your ongoing lab tests (eg, blood work, urinalysis)?vote now
  • In your opinion, who should advocate for trait testing in your community? (Please select all that apply)vote now
  • In your opinion, how important is it to increase trait testing for sickle cell disease in your community?vote now
  • What is the source you trust most for information about sickle cell disease?vote now
  • What is/was the hardest thing for your present/past employer to understand about your sickle cell disease?vote now
  • Do you feel you are able to manage your sickle cell disease on a daily basis?vote now
  • What are the top 3 things you wish your physician understood about your sickle cell disease? vote now
  • What are the top 3 things you wish you knew more about regarding sickle cell disease?vote now
  • After transitioning from pediatric care, how long was it before your first visit with an adult hematologist (or adult physician)?vote now
  • After transitioning from pediatric care, did you have difficulty finding an adult hematologist?vote now
  • Are you seen at least once a year by a hematologist for SCD?vote now
  • How long has it been since you or your loved one with SCD experienced an SCD-related emergency department visit?vote now
  • What symptoms push you to go to the ED during COVID-19? Please select all that apply.vote now
  • How has telemedicine benefited you during COVID-19? Please select all that apply.vote now
  • Have you tried to help spread awareness of sickle cell disease?vote now
  • Do you belong to any kind of support group for sickle cell disease?vote now
  • Are you able to care for yourself or do you require assistance of a caregiver?vote now
  • How happy are you with your level of medical care? vote now
  • Would you consider participating in a clinical trial in the future if you met the criteria?vote now
  • Have you ever attempted to participate in a clinical trial but did not qualifyvote now
  • Have you ever participated in a clinical trial?vote now
  • Have you or your loved one with SCD experienced memory loss as you get older?vote now
  • Have you had to delay treatment or medical appointments because of COVID19?vote now
  • How far to do you have to travel to obtain sickle cell care?vote now
  • Is there a sickle cell provider in your geographic area?vote now
  • If you do not have health insurance what are the obstacles to obtaining it?vote now
  • Do you have health insurance?vote now
  • Have you noticed any changes in Emergency Department wait times over the last few years?vote now
  • What is the average wait time for you when you go to the Emergency Department?vote now
  • How many members of your family, immediate and extended, have Sickle Cell Trait?vote now
  • How many other members of your immediate family have sickle cell disease?vote now
  • Have you noticed any changes in how you have been treated as a patient in the hospital over the last few years?vote now
  • Do you trust the medical establishment as a whole? vote now
  • What information do you think should be contained in a travel letter? Please select all that apply.vote now
  • What items do you pack and have ready when you need to go to the ER? Please select all that apply.vote now
  • Have you ever had trouble getting SCD medicine? If yes, what were the issues?vote now
  • What do people with SCD need most during this period of response to COVID-19? vote now
  • What are your considerations when planning to attend an SCD conference?vote now
  • Have you met an emergency department doctor or nurse that really treated you well?vote now
  • How long has it been since you or your loved one with SCD experienced an SCD-related hospitalization?vote now
  • Do you or your loved one with SCD get a flu shot every year?vote now
  • What is the biggest challenge you or your loved one faces at school with SCD?vote now
  • Have you ever felt guilty about some aspect of having SCD?vote now
  • Do you think others outside of your close friends and family understand the challenges you face in your SCD journey?vote now
  • Do you feel that managing your SCD experience has made you a stronger person?vote now
  • Has SCD ever interfered in your personal relationships?vote now
  • Has SCD ever interfered with your work life?vote now
  • Who is the person who has helped you most through your SCD journey?vote now
  • How much time do you spend per week researching, discussing, participating in social media, etc., related to SCD?vote now
  • If you have been diagnosed with sickle cell disease, how old were you when you received your diagnosis?vote now

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